My CRPS Experience at the Young Adult Weekend
Written by Guest Blogger Jess Henry-Cross
Jess was a participant in our very first CRPS Young Adult Weekend this past June. She was more than happy to write a brief blog about her experience and how it changed things for her. Why are events like this so important? Read about what Jess experienced to learn more.
Around 2:30 in the afternoon on Sunday, June 18th I found myself holding back a few (happy) tears. I was driving home after spending the last 45 hours with a group of women who recharged me in a way I had never even dared to hope for. I didn’t want the weekend to be over.
I signed up for the RSDSA Young Adult Weekend with one goal – to go kayaking on the Delaware River. I figured that I would give myself bonus points if I met a person or two who I could have a good conversation with. One of my worst habits is my constant expectation of disappointment, so imagine my surprise when I walked into this group of brave, beautiful, adventurous, determined, energizing, bad-ass rock stars. This weekend blew my mind. The instant connection and pure understanding amazed me. I had no idea how powerful it would be to venture into a community where others don’t just get [CRPS] RSD, they have [CRPS] RSD. I guess there really is something to those support groups I’ve heard about!
This ended up being a collaborative weekend where we all learned from and challenged each other. Some of us learned what our limits are and some of us expanded our limits. We had crucial talks on advocating for ourselves, whether it be in a doctor’s office, with an insurance company, on a college campus, out in the workforce, in a restaurant where the music is too loud, and even within our own groups of family and friends. There were midnight talks in hotel rooms, the contents of which will never leave those four walls. We shared and brainstormed tips and tricks for forming and maintaining relationships, self-care, transitioning from being a child with chronic pain to being an adult with chronic pain, sneaking into a wedding reception, and making the best s’more. I’m so proud to say that we all found adventure in some form on the Delaware River.
Over the last 8 years I have accumulated a lot of different things in my “living with RSD” toolkit. I’ve managed to find some great doctors, I have friends and family that support me, and I have access to a constant rotation of various treatments that keep me moving and grooving (and hopefully some more kayaking). I’ve come a long way from the darker days of my original diagnosis, but up until this weekend I was still too stubborn to admit that I needed to connect with a community that fully understood the burning pain I feel in my bones and the brain fog that steals my precious time. I think my toolkit took a hint from The Grinch and grew several sizes to fit in this remarkable group of new connections. I wish I could go back to freshly diagnosed 20-year-old me and tell her to do more than just ‘like’ a few Facebook pages and subscribe to a newsletter. To anyone out there who has never reached out for support, this is your sign – do it! To RSDSA – keep doing things like this. Keep bringing us together. The hugs may be gentle, but the support is fierce and life changing.
If you would like to donate to help make a Young Adult Weekend happen again, please visit rsds.org/donate!